A Study Of Informal Caregiver Care Burden And Its Influencing Factors During Transition In 89 Patients With Spinal Cord Injury

Objective:By understanding the current situation and changes in the caregiving burden of informal caregivers of patients with spinal cord injury at different times during the transition period and analyzing the influencing factors related to the caregiving burden at different times during the transition period,we provide some reference for the intervention study to reduce the caregiving burden of informal caregivers,the application and implementation of the transition care model and the development of targeted clinical continuity of care services.Methods:A longitudinal survey method was used to study patients with spinal cord injury and their informal caregivers who met the criteria in the Department of Spinal Surgery of a large tertiary care general hospital in Jilin Province from August 1,2019 to July31,2020,using the Patient General Information Questionnaire(including socio-demographic information,disease and rehabilitation-related information),the Caregiver General Information Questionnaire(including socio-demographic information and caregiving related information),barthel index rating scale,Pittsburgh sleep quality index,anxiety self-rating scale,depression self-rating scale,and Zarit burden of care scale as the research tools,and the patients with spinal cord injury and caregivers were surveyed and studied at discharge,1 month,3 months,and 6 months of discharge,respectively,and the data obtained were analyzed using SPSS 24.0statistical software,using repeated measures ANOVA was used to explore the dynamic trends of caregiving burden of caregivers of patients with spinal cord injury over time during the transition period,and one-way analysis of variance and multiple linear regression analysis were used to explore the factors influencing caregiving burden at discharge,1 month,3 months,and 6 months of discharge.Results:1.A total of 106 caregivers of patients with spinal cord injury were included,among which,2 cases died,4 cases were readmitted,6 cases changed caregivers,1case had a major family change,2 cases withdrew from the study midway,2 cases were lost,and finally 89 cases remained.Among the patients cared for,80.9% were male patients,workers and farmers were the main patient groups,more than 2/3 of the families had a per capita monthly income of less than 2000 RMB,73% of the patients paid for their own medical treatment,59.6% were from rural areas,22.5% of the caregivers had no source of income,and the separation rate was high at discharge and at 1 month of discharge,61.8% and 47.2%,respectively,and patients with spinal cord injury Families are at high economic risk of illness.More than half of the caregivers had more than 12 hours of daily care within 1 month of the patient’s injury.69.7% and50.6% of the caregivers had additional physical and/or psychological illness/symptoms at 1 month and 3 months of discharge,respectively.2.Informal caregivers of patients with spinal cord injury had varying degrees of caregiving burden at different times during the transition period,with 100% of caregivers having a moderate or severe caregiving burden at discharge and at 1 month of discharge,82% at 3 months of discharge,and 56.2% at 6 months of discharge.3.The total caregiving burden scores at four time points during the transition period were 61.96±7.96,65.74±10.14,54.17±15.48,and 42.85±16.65,respectively,and the results of the repeated measures ANOVA showed that informal caregivers of patients with spinal cord injury had the highest caregiving burden score at 1 month of discharge and the lowest score at 6 months of discharge,and the caregiving burden showed an increase stage was within 1 month of discharge,and then the caregiving burden score showed a gradual decrease with time(F=197.870,p<0.001),but at 6months of discharge the caregiving burden was still at a moderate level or higher.4.The differences were statistically significant(P<0.05)when comparing the caregiving burden scores for per capita monthly income,gender of caregiver,cause of injury,degree of injury,ability to perform daily living,number of complications,length of caregiving hours per day,and whether the caregiver had new diseases/symptoms at 3 months of discharge;and at 6 months of discharge.At 6months after discharge,the differences were statistically significant(P<0.05)when comparing the caregiving burden scores by per capita monthly household income,degree of injury,ability to perform daily living,number of complications,length of caregiving per day,and whether the caregiver had new diseases/symptoms.5.Separately,indicators with statistically significant analysis of variance at 4different time points during the transition period were included in multiple linear regression,and the results showed that at discharge,the influencing factors were degree of impairment,ability to perform daily living;at 1 month of discharge,the influencing factors were degree of impairment,monthly per capita household income,ability to perform daily living,number of complications,and the presence of new diseases/symptoms in the caregiver;at 3 months of discharge,the At 3 months of discharge,the influencing factors were degree of impairment,ability to perform daily living,number of complications,and the presence of new diseases/symptoms in the caregiver;at 6 months of discharge,the influencing factors were ability to perform daily living,number of complications,and the number of hours of caregiving per day.Conclusions:1.Informal caregivers of patients with spinal cord injury during the transition period are affected in many ways,physically,psychologically,economically,and socially,and there is always a high level of caregiving burden.2.The peak in informal caregiver caregiving burden at 1 month of discharge from a spinal cord injured patient is a critical time when their families need enhanced support.3.The factors influencing the caregiving burden of informal caregivers of patients with spinal cord injury at different time points during the transition period varied and differed,with degree of injury and ability to perform daily living as the main influencing factors at the time of discharge;degree of injury,monthly per capita household income,ability to perform daily living,number of complications,and the presence of new diseases/symptoms of the caregiver as the main influencing factors at1 month of discharge;degree of injury,ability to perform daily living,number of complications,and the presence of new diseases/symptoms of the caregiver at 3months of discharge;and At 3 months of discharge,the degree of impairment,ability to perform daily activities,number of complications,and the presence of new diseases/symptoms in the caregiver were the main influencing factors;at 6 months of discharge,the ability to perform daily activities,number of complications,and the length of daily care were the main influencing factors.Key populations should be identified according to the influencing factors during different time periods of the transition period,and preventive and targeted measures should be taken to reduce the burden of caregivers and improve the quality of care.